"I Lived" Because of Christine

I was very impressed (that would be an understatement) when I saw the new One Republic music video "I Lived" for the first time. It may be the best awareness video that has ever been put out in the cystic fibrosis community. It is rare to find an awareness piece that does such a great job in striking the perfect balance between education and inspiration. 

"I Lived" by One Republic

The music video below features real-life CFer Bryan Warnecke talking about what CF is, how it's treated, what his expectations are, his fears, his blessings and everything in between. What I took note of however, which may ultimately be most important for CF patients and their families, may not be what others noticed. Before I get into that, please watch the video below:  

Be Who You Want To See

So what struck me most about that video? His parents. I wish I could give them a hug and a high-five and say "job well done". They put their son in the best position to live out the title of the song. That video was much more about life than it was about CF. And when our parents allow us to live, in spite of CF, we can often look back and credit their approach for our successes as CFers.

Did you see how they raised Bryan? And in return, Bryan's attitude toward a life with CF?

"It's just one of those things that really makes you appreciate life. Makes you appreciate where you are as a person." - BW

That would not be his attitude if he was raised to fear a life with CF. If he was made to think that life gave him the short-end of the stick.

I do not know them personally, but I guarantee they modeled that mentality through action and words.

Judging by the clips, the last thing on their mind was that CF was a life-altering or life-shortening disease. Judging by those clips, they parented their son Bryan, and not the disease cystic fibrosis.

A Life In Spite of CF

So what did living life in spite of CF look like to them?

• Falling into a pit of foam, in a public play place (eeeeeeek!!!) at 1:17
• Riding a bike and falling over without a parents fear that their son is somehow "more fragile" at 1:47
• Riding in a tractor down a dusty road (oh no!!!!!!) at 1:56
• Water skiing in a lake (please make it stop!!!!) at 2:07 and 2:11 (with mom cheering in the background)
• Tumbling over in an electric ATV then being "put back on the saddle" and encouraged to try again at 2:19
• Boogie boarding in the ocean at 2:26
• Jumping head first into a pool, maybe public (ahhhhhh!!!), at 2:35
• Snow skiing at a presumably high altitude at 2:58
• Back to the dusty tractor ride at 3:00
• Playing hockey, which I assume means he's in a public locker room with his team at some point (I can't take it anymore!!!), at 3:24 

A Life Ruled by CF

Now, I didn't randomly pick those scenes out of thin air. I picked them because they are all things my mom would have prevented me from doing 34 years ago. When I was diagnosed with CF, my mom forgot that she had a son and instead only remembered that I had a disease.

Does that make her a bad mother? Absolutely not! She did the only thing she instinctually knew how to do as a mom - protect me. Her protection came in the form of shielding me from the outside world in fear that I would become "more sick".

If she would have continued parenting me like that, there is no doubt that I'd be dead.

My Life Changed

By the grace of God, at the age of 5 or so, my very imperfect mom with the very imperfect kid made the most perfect decision, to let me live. In fact, it was this quote by my doctor that started it all...

"If you continue doing what you are doing, not only will Ronnie be somewhat physically disabled his entire life, but he'll become mentally disabled as well...and that's far worse"

That's when my life changed.

She no longer parented the disease, she just started to parent Ronnie, her rambunctious son.

Mind you, this was still tough sledding for my mom. Not allowing the disease to make every decision for her didn't feel natural. There were many times where her heart and her head didn't agree. She had to practice parenting me apart from the disease. It was a decision that she chose to make every single day. That doesn't mean it was easy.

The fear was still there. The agony still hovered over her at times. The doubt crept into her mind from time to time. You know what though? She never let me see that. She would cry herself to sleep almost every night, something I didn't know until about 6 years ago. I never saw that.

After she popped the bubble she formed around me, the only mom I remember was the mom that told me to live, and live well. The mom who sacrificed her afternoons and weekends by having me in sports year round. The mom who made my health our families number one priority, while still be a fantastic mother to my two younger brothers. The mom who would come home physically and mentally exhausted from work, yet made sure to hand pound my chest, back and sides for 45 minutes like she had done before leaving for work in the morning. The mom who took a job that she was overqualified for, and not all that interested in, because it had the best medical insurance in the state. The mom who made me believe that if I put my health first, I was capable of anything. The mom who talked about when I would go to college/get married/make her a grandma, and never "if". The mom who made cystic fibrosis feel like such a small part of our lives, even though most of her energy went to managing it. The mom who raised a boy who was proud of having CF, because she made it clear that she was proud of me - the boy with brown hair, buck teeth, a loud voice, fast feet, quick wit, and oh yeah, cystic fibrosis.

I'm asked all of the time, "where does your attitude come from?". That's easy. My mom.

My Mom, The Perfect Mirror

My mom made me into the man I am today by using CF, and it's inevitable challenges, as another tool in her tool belt. She had me convinced that CF helped mold me into the boy that was the "apple of her eye". She always talked about what a blessing CF was to our family. She was quick to point out the opportunities that came along because of cystic fibrosis. She often reminded me of all of the great people I met and friends I had that would have never been a part of my life without CF.

I loved my life with CF, because my mom loved our life with CF.

Frankly, if she would have shown me that she hated CF, I would have thought that she hated me, too. If she would of shouted "CF sucks", I would have heard "our life sucks".

I never once got that feeling from my mom. I haven't heard her speak a bad word about CF to this day.

She perfectly modeled everything she wanted to see in her son and for that I am forever grateful. Like Bryan's parents, she made sure that a life with CF was a life full of living.

The only reason I'm able to write this blog 34 years after I was diagnosed with cystic fibrosis - with her granddaughter tucked safely in bed and my wife nestled up on the couch -  is because I had a mom who believed, from the bottom of her heart, that I would.

"I Lived" because of Christine. I love you mom.

Permission to Nag

There are many things I love about Ronnie (obviously, I did choose to marry him after all). One of the things I really love and respect about him is the fact that he is very self aware, especially when it comes to taking care of himself. Let me explain.

I think it's easy to kid ourselves when it comes to how we're doing at taking care of ourselves. For example, I may feel like I'm eating really healthy, and then I sit down and write what I've eaten for the last few days, and soon realize that I've probably had 3 too many handfuls of chocolate chips, not nearly enough fruits and veggies, and slacked on water consumption. Or I may think I'm doing well with my working out, but realize I've gone to the gym half as much as I did while pregnant. These explains seem a little detailed? That would be because in writing this I did a bit of self reflection...yikes! It's easy to have our perceptions be way off from reality when it comes to how we're taking care of ourselves. I'm definitely guilty of this!

Somehow (probably not a fluke, I'm sure it's the way God wired him, knowing he'd have CF and how important it'd be) Ronnie is very aware of how he's doing when it comes to taking care of himself. He knows when he's slacking and he knows when he's kickin' booty. The best part is, when he knows he's slacking, he makes every effort to get back on track. I totally love that about him. Just yesterday he said, "hey honey, call me out about doing my treatments and getting to the gym this week. I can feel myself slipping a bit." How many people ask their spouse to be a nag and call them out? I'll answer that for you, not many. But he knows how important it is for him to go above and beyond to take care of himself as best as humanly possible. And you know what I love even more? "Slipping" meant he was only doing 3 treatments and he wants to do 4, even though his doctors only have asked him to do 2. And he's been going to the gym 4-5 times, instead of 5-6. Even though he was doing well, he was aware of the fact he wasn't doing as well as he should, and recognized he needed some external motivation to get him going. The natural born nag in me was thrilled...permission to nag?! You got it!

It's all too easy to kid ourselves about how healthy or unhealthy we're living (CF or not). And sometimes it's hard to get back on the wagon alone. So this week, do as we're doing, give someone in your life permission to be a nag.

Moganko For Cystic Fibrosis Awareness

In the mood to not only be entertained today, but also educated? Good, you've come to the right place!! Allow me to introduce you to Moganko. Moganko is a buddy of Josh from Joshland and his job is to spread awareness of Cystic Fibrosis, as well as show kids (and adults) that living with CF can be full of fun and laughs. Please watch the following video and then head over to www.mogankoforcf.org to check out a TON of other cool videos that will entertain AND teach your kiddos some great lessons about life and CF.



Now following the following link to support this incredible project and give my fellow fibro Josh some love...and you can say hi to Moganko too :)

Moganko For Cystic Fibrosis Awareness: Welcome Everyone!

Second Trimester and National News

This week is an exciting week for us in "baby land". We are going to be 14 weeks pregnant tomorrow (Tuesday) and therefore are officially in the second trimester. Quick side note: I keep finding different definitions of when the second trimester officially starts, but 14 weeks is the latest I've seen, so that is what I went with. Anywhoo...I'm thrilled that we are officially out of the "danger zone" that is the first trimester, and we are now allowing ourselves to get fully excited. Well, to be honest, I was pretty fully excited, but I kept trying to remind myself that I should remain a bit reserved until the second trimester mark.

Now starts the "fun" part of pregnancy, or so I read. Supposedly the second trimester is the easiest and the most comfortable. I haven't had any real morning sickness, so I think I'm probably in the lucky bunch that made it through the first trimester happy and comfortable, so this will likely be more of the same for me. I will say, the one thing I'm hoping the second trimester brings is a balance in my hormones, in the hopes of clearing up some of this raging acne I'm experiencing. It has steadily gotten worst over the last 7 weeks or so, and is full blown now. It's a bizarre really - a ton of acne all over my jawline and cheeks. And the worst part is that it itches and burns at times. I'm hopeful that my body will begin to stabilize and my face will steadily clear throughout this trimester, but I'm not holding my breath - my new "friends" may be here to stay until after little peanut is out of my belly. If I can push my vanity aside, we will post pictures of it - and considering Ronnie keeps saying "MAN WE NEED TO TAKE PICTURES OF THIS", my guess is that pictures will be up at some point soon.

Back to the awesome parts of this pregnancy. I am starting to get a little more of a belly (pictures will be posted in the next few weeks, once there's more growth). I'm excited to start showing. Right now it's just big enough to look like I could be pregnant, but not quite big enough that anyone would be confident enough to ask when I was due. Now I'm just counting down the weeks until I have a legit belly, and REALLY eagerly awaiting the day that I can feel our little peanut moving. In the meantime, I'll wonder if every tummy rumble and gas bubble (is that TMI?) is the first little feelings of peanut moving.

And on a totally different note, I feel the need to at least mention the major headline of yesterday. Ronnie and I watched the breaking news of Bin Ladin's death most of the evening last night. Now let me first say, I am not into politics - so I won't get political on you all today. But I will say a few things. First, I think it's great that after 10 years, we finally found him. I am especially thrilled that this day has come for the families affected by 9/11 and for the all the troops that have worked towards this moment. Second, I was pretty impressed by Obama's address. Whoever wrote that address did a really good job. I can't imagine the pressure of having to write something like that in just a few hours time. The thing I liked best about it, is that I think it was very mindful and geared toward an international audience. Anywhoo, I'm no political analyst, just felt like I should at least acknowledge the big current event!

**BE SURE TO WATCH HAWAII FIVE-O TONIGHT ON CBS. THEY ARE TALKING ABOUT SURFING, SALT WATER, AND CYSTIC FIBROSIS. WE ARE SO THANKFUL FOR OUR FRIENDS AT THE MAULI OLA FOUNDATION AND AMBRY GENETICS FOR GETTING CF TO BE WORKED INTO THE SHOW. GREAT AWARENESS!!!

So When Do We Tell Our Friends About CF?

Here is an email exchange between a reader and myself about the struggle of wondering when to introduce new friends to our Cystic Fibrosis:

i just realized something, ive made so many videos while i was in the hospital, and NONE of them were about cf...wow! i get so mad that theres no cf awareness in the world and i HAVE cf, and im not even doing anything about it, thats sad. its just i dont wanna be know as the boy with cf, i wanna be know as casey the funny kid. ya know? so i never really thought about making cf videos or telling ppl ALL about cf. this is my strategy when i meet someone new; i give them my name, and say a bunch of stuff to make them laugh, then talk to them for a few days after a few weeks were hangin out with other friends...THEN i tell them i have CF. i let them get to know me for me before i let them know i have cf, and ive realized the ppl i tell right away treat me WAY different from the ppl i tell later on. i have no idea where i was going with this, BUT this is just something i've always went through, and i know from your "CF doesnt define me" blog, you do kinda the same thing.

Response:

Don't worry about being Mr. Awareness for CF, we all get comfortable at different rates. Here's the deal though, we're not contagious so people have no reason to fear us. Also, it's important that YOU explain YOUR CF to people and that they don't "google" it to find out what it is. If they do that they'll probably wonder why you're still alive :) People's reaction to CF is generally a reflection with how we feel about CF. If we seem scared, or sad, or make it a big deal, that's exactly what the people we tell will do. When I tell somebody about CF I usually downplay it a bit, but not to the point that they don't think it's a serious illness that need support. I often tell people that it's like I have pneumonia and asthma all of the time. Everybody knows exactly what those two things are so they can automatically kind of understand what I'm talking about. People are scared and react in different ways to the "unknown", just make sure your friends know what it is. If they don't support you in that, then why in the world would you want them as friends? Know what I mean?

Most people in my high school knew I had CF, but I was also the class clown. That's just me. People know us for our personality. CF is not a personality trait unless you make it one. If you act like a victim, or have a bad attitude, or are a secretive person, it is often because of CF that you are that way. Then, CF becomes part of your personality and that's what people know you as. Who would want to be around a person with all of those negative traits? I know I wouldn't. If you don't make CF part of your personality or let it affect you negatively emotionally, people will only know you as (name withheld). Sure people may know that you HAVE CF, but they won't think that you ARE CF. There is a HUGE difference. See, I HAVE CF, but CF doesn't HAVE me.

Here's what I do as far as when to tell somebody I have CF (and I know that I'll see them again). Generally speaking I have a pretty good "in" if me and that person are at the same table for dinner or something. Know what I do? I pull out the enzymes and set them right on the table. 9 out of 10 times I get the question "what are those?". Then I tell them what they are, what they're for, and why I take them. Then I tell them about CF, but here's the key, I tell them about MY CF. I don't recite statistics or the same jargon you can get on any website about CF. They're not interested in being friends with CF, they want to be friends with me. So I go into MY CF experience; how it affects me. I promise that they care more about that then all of the statistics that they'll forget anyway. But I'm very open about my CF and then encourage them to ask any questions if any ones ever come into their mind because as I tell them "I'm an open book".

I haven't noticed a difference in how people treat me as to whether I tell them right away or not. But I cough a lot so it usually comes up pretty close after meeting someone. Plus, I figure the more people that know about it, the easier time the generations after me will have with explaining CF. Everything to do with CF, from acceptance, research dollars, a cure, education, and involvement stems from awareness. The more aware people are of this disease, the better of a chance we have.

I hope all of that makes sense. Don't hesitate to email me again.

Do Life,

Ronnie

**Originally "aired" on July 16th, 2009**

Linday's Lungs

I had the absolute pleasure of meeting Lindsay tonight at the CFF Breath of Life Gala here in Phoenix. She actually entertained the crowd with a couple of amazing numbers. That girl can absolutely sing!! She held one note for longer than I can actually concentrate. Meeting her tonight reminded me of the great CF awareness video she did a while back and I wanted to share it!

My Idea of a CF Awareness Video

My fibro Josh is many things and as you can see in the following video, he draws upon many of those "things" to make an outstanding CF Awareness piece. Great work J-Dizzle!!!

You can visit Josh at his blog Welcome to Joshland by clicking here.

One of My Favorite Cystic Fibrosis Awareness Videos

This video really pulls at my heart strings and is very well done. Enjoy and pass it on!

One More Day Wednesday

Only one more day to go in The Hole!!! I sure look crazy in the video down there :) I touch on the importance of "sharing our playbooks" in the CF community and how important it can be to become involved. I encourage you to join us so we can stand up with one voice and let the world know that we are indeed here!!!

What do you say? Ready to turn this world on it's head? Let's do it!

Inhaling Life!!!!

Guest Post by Destiny Whittington

My journey with cystic fibrosis started when I was eighteen months old. The doctors told my mom to take me home love me until I was gone; I wouldn’t see three years old. But, as I got older, I was relatively healthy, so much so that I had no idea that I had CF ‘til I was twelve years old. My mom never came out and said to my brother and me “kids, you have a terminal illness.” We took our breathing treatments, our enzymes, and we did our clapping but to us it was either a game we played, or I just thought everyone took meds, so everyone has what I got. Little did I know that was far from the truth.

When I was ten, I was diagnosed with rheumatoid arthritis. That was the first moment I truly felt my world falling down around me. I love basketball and was good at it. I ran track, coming in first or second place. My dream was to join the navy and play basketball for them, while getting my training and education in marine biology. I was an active child I didn’t have time for CF or this RA. It wasn’t in my lifetime dream or plans.

The doc had told my mom those grim words behind his concerned smile, “take her home and love her she will be a vegetable by the age of sixteen years old. She will never learn to drive a car or go to prom. Think of a nursing home you want to put her in, to care for her when you can not anymore.”

At the age of twelve, my CF doc had this brilliant idea to help me gain weight, which was to insert a G-button to help ease the pain off my joints, by adding some meat on my bones. Two days later I was in Texas Children’s Hospital, in Houston, Tx having a fundoplasty and a G-button insertion, and just as he had said: I gained weight. My arthritis had its good days and bad days, but then at the age of seventeen it went into complete remission, with very few to no episodes.

I finally, by the grace of God, graduated high school and went to college. I begged for my doc to take out my G-button. He agreed, against his better judgment, but I promised him I would stay at a healthy weight. That ended up being more of a job then I first thought. Eating lots of calories seems like everyone’s dream but damn 2k - 4k per day is a lot of eating!

After college was the first time I ever experienced hemoptysis or pseudomonas. Before then, I had never heard those words before. I was in and out of the hospital - sometimes for months at a time - getting to go home for a week or two, then back in. Out of a twelve month year, I was in for nine-and-half months, total. My doctor thought right now would be a good time to put in a port a cath.

Then, in December of 2004, while moving into my new apartment on the third floor, I began to feel wheezing. I thought to myself when I stop I need to do a quick breathing treatment. It began to get worse… Then, a very familiar and unwanted taste began to make itself present in the back of my throat, and with one cough I saw the parking lot turning a dark, deep red color. I went back up the stairs as fast as my body could carry me, filling up the sink will blood. I thought in my panic state of mind, to grab a cup and collect the blood. When the blood showed no sight of slowing down or stopping, I thought to call my mom (who worked thirty minutes from me and it naturally took her an hour to get to me). I was getting weak, I could barley talk, and by the time my mom had gotten there, I was passed out. My brother and Mom carried me down the stairs. Even in that state, my mindset was: I can still walk down the stairs. Failing miserably to get down the stairs by myself.

After arriving to the ER, I handed the cup to the nurse and doc, who were amazed at the amount of blood: a whole cup. I was being rushed in for an emergency embolization and, due to the amount of blood I had lost; I also had to have a blood transfusion. When I woke up my doc was standing over me and began to tell me what was going on, what they had done which most of it I remember or knew already. She said that the cup I had brought in had masses in it. I thought yea, it is probably my bbq sandwich I had eaten only minutes earlier but she went on to tell me they had done a biopsy of the mass and it was in fact, lung matter, I had literally coughed up pieces of my lung. My regular CF doc had came into my room sat down with me, smiled and said “Destiny, you are coughing up a lung, you have a few options here”. She then began to explain to me that I would probably want to consider taking that part of the lung out, or have it replaced. I didn’t think either was a good option for me. She explained that the bleeding could happen again and that the next time it may not stop and could kill me. “a ticking time bomb” is the words she used. I stuck with my guns, after getting the scare of my life I vowed to start walking, and whatever else I had to do to get better.

My pfts were in the high 90s and I was feeling pretty good and then about two years ago I began to get lazy, unmotivated and on 09-11-09 my PFTs were at 80% fev1: 2.6 the lowest I have had. I was getting my prescreening to do a research drug for Texas Children’s Hospital and my PFTs had to be 80 or lower just so happened they were at 80% a part of me was happy b/c I wanted to do this study but another part was sadden. I had seen that my laziness had let me drop so low. I had been reading Ronnie’s blogs and watching him exercise and missing that part of my life, so I told my boyfriend Jack that we needed to start exercising, instead of taking my dog in and out to do potty business, I now walk her around the block or a mile at the park coming in coughing bringing up all kinds of stuff. On 11-10-09 my PFTs were 95% fev1: 2.86. There are still days when I don’t want to go walk a lot due to my RA, or if the weather isn’t permitting. I will resort to my top of the line medicine, or as I say, “the cure all”. I will get on the net and look up funny videos and starting laughing and snorting till I am coughing up tons of mucus and I feel tons better.J

My mom was told more than once by doctors that I would not live past 2 and if I did there would be no way it would a “normal” life, My mom didn’t listen to them she let my brother and I play baseball, basketball, track, girl scouts and whatever else we wanted to do we got dirty making mud cakes, and we got plenty in trouble at school and home. She never treated us different and didn’t let anyone else either. I am now looking at the age of 29 in only 5 months and I am doing incredibly well. My fighting and positive attitude is what helps me the most. We are all in this together. I am not going to quit, I’m not stopping, I may bend but I will not break. I am determined to find a cure in my lifetime. This is for the future CFers.

Let us together have CF stand for “Cure Found”. God bless ya’ll and thank you for taking time to read this.

Bio: My name is Destiny. I am a twenty-eight year old CFer. I live in Houston Texas. I live with my amazing boyfriend Jack and our dog meme, whom will be 6 years old on Valentine’s day. I’m going to college for the third time, in hopes of doing something with this degree.

I would like to take a moment to Thank Ronnie for this opportunity to be able to speak out about my story. I began reading Ronnie’s blog a few months ago, I just fell in the love with his passion for reaching out to fellow CFers and his drive to make a better tomorrow for himself and others around him. I knew I wanted to a part of it somehow. So each day I became inspired, motivated and ready to take on the world.

When first asked to do this, I really didn’t know what to talk about. As all of you know, CF isn’t one-sided. We all have the battle scars to prove that.

Note from Ronnie: I just wanted to give a big thank you to Destiny for writing an outstanding guest post for RSR. She is a great example of a CFer who decided that "enough was enough" and to take CF head-on. We may face some pretty daunting obstacles but through a little bit of hard work and perseverance, we CAN have some control over this disease. Please leave Destiny your encouraging comments as well as any questions you may have! You can find her on Facebook, Twitter @InhalingLife and www.InhalingLife.com.

If you are interested in writing a guest post for RSR simply send me an email with a little bit about yourself and what you'd like to write about.

Great Opportunity for CF Awareness

Here's some of the things that I'm so thankful for today....

I would be remiss if I didn't acknowledge how thankful I am for all of those who have served in our great military. I have many family members who have served honorably (and continue to do till this day) and am humbled by the dedication they have to serve. My dad retired a Chief Master Sergeant in the United States Air Force a handful of years back and his retirement ceremony continues to be one of the most emotional days that I've ever had. I can say without a doubt, that I was more proud of my dad that day than I have ever been before. To see how many lives he had touched during his military career was truly breathtaking. So to all of the men and women who serve this great country of ours and protect freedoms that I take for granted every day, THANK YOU!!!

I'm so thankful for my positive support system that has grown online. I've always had great family and friends that have been there for me and root me on like nobody's business, but it's nice to feel all of love coming from parts of the CF community. Like all of my other fibros and cysters know, you'll never really get it, unless you're in it. The fact that I have so many of you cheering me on that have been there and feel what I feel means the world to me. You'll never truly know what it means to me and I only hope that I can support and inspire all you as much as you have supported and inspired me.

I'm so thankful for the opportunity that Mandi and I have coming up this weekend in Dallas, Texas. We've been invited to be the "CF Education and Information" czars at an event called the CF Concert Series. I just hope that when people walk away from that event, they'll know more about CF than when they came. And if things go really well, we'll be able to plant a seed in those people that not only make them feel compelled to learn more about Cystic Fibrosis, but to pass that knowledge on to friends and family. A cure for CF starts with awareness and we hope to be able to create much of it at this event.

Music Video for Cystic Fibrosis Awareness- Must See!!!

-I wanted to highlight the great work that the people over at CFVoice.com are doing for the CF community. If you've never been to their site, you're really missing out on a lot of great information. They recently completed a project that gave honor to a late singer who died from Cystic Fibrosis. His name was Matt Scales and he had written and performed a beautiful song called Breathe before his death. For this project, they brought together other singers who have Cystic Fibrosis to sing a remix of sorts to honor Matt and to bring Cystic Fibrosis awareness to another level. If you don't have the time to watch the whole video, I suggest you make time. It's VERY inspirational and VERY well done. Please follow this link to view the music video.

- AFTER you're done watching the sensational video over at CFVoice.com, I invite you to check out one of my favorite music videos of all time. Seriously though, first go watch that music video; you'll be soooo glad that you did!

Many of you may have already seen this next music video, but if you haven't, I suggest plugging your ears....

(I apologize upfront for the episode at 3:07, my emotions got the best of me...seriously though, I wish I could sing)

RunSickboyRun Featured on NatureMade.com!!!!!

Some of you may remember me entering the "Fuel Your Greatness" contest a hand full of months ago. Good news, I won!!! It was a GREAT opportunity to spread more awareness for Cystic Fibrosis. They interviewed me by phone and I provided them some pictures for the online photo documentary. I encourage you to check it out over at NatureMade.com.

If you didn't get a chance to read the winning essay, you can check it out here.

Want to participate in CF awareness project?

I am looking to put together an informational flyer about CF called The Faces of Cystic Fibrosis. On it, I want to include pictures of CFers and a paragraph about the person (age, hobbies, occupation/grade, etc) and what they do to take care of their CF (treatments, medications, hospitalizations, exercise, etc). If you're interested in having yourself (CFer) or child (CF parent) featured, shoot me an email with a picture and bio about the CFer. Man...I just realized it's tough to address both CF parents and CFers at the same time, but I think you get the point...we want pictures and bios of CFers. You can send the pictures and bios to my email account at melin.amanda@gmail.com or you can send them to Ronnie and he'll send them to me. The sooner the better and the more I get the better. We are hoping to have an equal spread of males and females and a variety of ages. If I can't use them all on this flyer, I will save them for another project. Please include in the email if you're ok with me using these pictures and bios for other such materials. Below are a few examples of the kinds of pictures we're looking for:

If you don't know how to crop a photo or don't want to go to the work to do so, you can just send the picture as is and I'll crop it and make it black and white! Also, if you have a few you like, send them all on...I love pictures :)

Thanks so much for your help on this. I really really appreciate it!

Why I'm a Cystic Fibrosis Awareness Junkie

Let me come right out and answer the question that I know is on everybody's mind; yes, I have the same shirt on from yesterday. Whew, glad I've gotten that out of the way :) In the following video, I discuss why I am so passionate about spreading awareness for CF. Enjoy!

Inspire Just ONE Person

First, I wanted to thank everybody who responded both on this blog and to my personal email about some changes that I could make with RunSickboyRun. I'm still looking for other suggestions (cause I didn't like any of the others :) just kidding) and by clicking here you can get back to that blog. I would love to hear any and all changes that you would like to see. It's very important to me that I write a blog that people will enjoy going to and then telling their friends about. It's all about awareness. It's amazing the people that will follow this blog daily now. I of course have other CFers and their families, but I also have runners, triathletes, old friends I haven't seen in 10 years, and random people from random places. If I could inspire just ONE of those people to join the cause and fight along side of me, I will feel that my mission was accomplished.

I think we're really close to giving CF a big blow to the gut and taking it down a few notches. We just need help with that final push. That's where all of you come in, we can't keep CF a secret. People need to know about the disease that has taken so many of my friends, caused heartache in so many families, and eventually will be the end of me. We can't sit back and just let this thing run it's course, we need to fight, and fighting starts with creating awareness. You can't support what you don't know. People won't part with their hard earned money unless you give them a reason. I think we can give them that reason, don't you?

On a completely different note, I didn't get to the gym until later today, but Mandi's dad was able to join us. I let him pick the workout, and sense he won't be able to workout for a couple days due to travel, he took us through a total body workout. We lifted arms, chest, back, and abs. Ok, so not total body, upper half of body :) It was nice to do something different for a change and at the pace we went my muscles got fatigued very quickly. Overall, we all got a great workout in and I'm definitely going to miss Eric (Mandi's dad) being around. Her parents take off tomorrow, but then Nancy (Mandi's mom) will be back in a couple of weeks. She then will go back to China around July 30th. It's been so nice to have them around and it really stinks to see them go.

And my last completely different note: You need to read this next link I give you. It's my gal CysticGal's blog and she wrote a GREAT blog about exercise and excuses. You need to go to it by clicking here. I can't be clear enough, GO TO HER BLOG AND READ THIS POST. It is certainly a post after my own heart.